Anyone Ever Have This Issue?

[Guest guest]

I wonder if once her bones begin to harden up if they'll hold their position

better. Otherwise I just don't have anything to offer except that I'm sorry

you're all dealing with so much frustration here.

How many hours a day do you get down to before the relapse starts over again? I

assume you've tried about everything with the FAB by this point.

s.

Anyone Ever Have This Issue?

Our daughter was seen once again by Dr. P on Monday. We were in for a two week

'recasting' since just two weeks ago we'd come for our normal 3 mos check up and

she was once again relapsing in her left foot.

This has been an ongoing thing. Our local ortho had her completely corrected

and we did the FAB mostly 24/7. We go back to him after 3 mos when I knew she

was relapsing in the left and he says she'll need AFO's during the day and the

ATTT surgery but she's not relapsing. We knew better and headed to Iowa. Dr. P

did a series of casts last December/Jan and we went back in to the shoes for 20

hours a day. In March we went back for a check up and she was relapsing again

and he recast her for one three week period. In June we go back and all is

fine. By the end of the summer I knew she was relapsing again.

Two weeks ago he confirmed it and recast her. While we were there the visiting

Drs and Dr M and Dr P had much discussion about her feet and I didn't catch all

of it but some of it sounded a bit ominous. This week Dr. P says he just

doesn't get it. Can't figure out why this foot won't stay corrected. He is at

a loss and says we need to see a neuro. We've done that already twice. She

doesn't have CP. No physician, therapist or any other professional we interact

with regularly and some not so regularly say she has any chance of having it so

that's moot as well. Dr. P just shook his head and said he just didn't know

what to do now. We have the last cast on it and will soak it off in a few

weeks. Then we are to set her foot at 50 degrees - she has loose ligaments.

But I'm sure it will relapse quickly again. Has anyone ever dealt with anything

like this? If so, have you found something that helped?

Chris

A waist is a terrible thing to mind.

[Guest guest]

Our daughter was seen once again by Dr. P on Monday. We were in for a two week

'recasting' since just two weeks ago we'd come for our normal 3 mos check up and

she was once again relapsing in her left foot.

This has been an ongoing thing. Our local ortho had her completely corrected

and we did the FAB mostly 24/7. We go back to him after 3 mos when I knew she

was relapsing in the left and he says she'll need AFO's during the day and the

ATTT surgery but she's not relapsing. We knew better and headed to Iowa. Dr. P

did a series of casts last December/Jan and we went back in to the shoes for 20

hours a day. In March we went back for a check up and she was relapsing again

and he recast her for one three week period. In June we go back and all is

fine. By the end of the summer I knew she was relapsing again.

Two weeks ago he confirmed it and recast her. While we were there the visiting

Drs and Dr M and Dr P had much discussion about her feet and I didn't catch all

of it but some of it sounded a bit ominous. This week Dr. P says he just

doesn't get it. Can't figure out why this foot won't stay corrected. He is at

a loss and says we need to see a neuro. We've done that already twice. She

doesn't have CP. No physician, therapist or any other professional we interact

with regularly and some not so regularly say she has any chance of having it so

that's moot as well. Dr. P just shook his head and said he just didn't know

what to do now. We have the last cast on it and will soak it off in a few

weeks. Then we are to set her foot at 50 degrees - she has loose ligaments.

But I'm sure it will relapse quickly again. Has anyone ever dealt with anything

like this? If so, have you found something that helped?

Chris

A waist is a terrible thing to mind.

[Guest guest]

Yep. No avoiding it, 2-3 casts for 2 wks each every 6 months. What

part of 's foot is relapsing? We are so frustrated it is

sickening. Dr Pirani agreed to see Kai, and if (when) he relapses

again, that is probably what we will do just for a fresh perspective,

but we are at a loss ...

Angel

> >

> > Our daughter was seen once again by Dr. P on Monday. We were

in

> for a two week 'recasting' since just two weeks ago we'd come for

our

> normal 3 mos check up and she was once again relapsing in her

left

> foot.

> >

> > This has been an ongoing thing. Our local ortho had her

completely

> corrected and we did the FAB mostly 24/7. We go back to him

after 3

> mos when I knew she was relapsing in the left and he says she'll

need

> AFO's during the day and the ATTT surgery but she's not

relapsing.

> We knew better and headed to Iowa. Dr. P did a series of casts

last

> December/Jan and we went back in to the shoes for 20 hours a

day. In

> March we went back for a check up and she was relapsing again and

he

> recast her for one three week period. In June we go back and all

is

> fine. By the end of the summer I knew she was relapsing again.

> >

> > Two weeks ago he confirmed it and recast her. While we were

there

> the visiting Drs and Dr M and Dr P had much discussion about her

feet

> and I didn't catch all of it but some of it sounded a bit

ominous.

> This week Dr. P says he just doesn't get it. Can't figure out

why

> this foot won't stay corrected. He is at a loss and says we need

to

> see a neuro. We've done that already twice. She doesn't have

CP.

> No physician, therapist or any other professional we interact

with

> regularly and some not so regularly say she has any chance of

having

> it so that's moot as well. Dr. P just shook his head and said he

> just didn't know what to do now. We have the last cast on it and

> will soak it off in a few weeks. Then we are to set her foot at

50

> degrees - she has loose ligaments. But I'm sure it will relapse

> quickly again. Has anyone ever dealt with anything like this?

If

> so, have you found something that helped?

> > Chris

> >

> > A waist is a terrible thing to mind.

> >

> >

[Guest guest]

Apparently the foot is not as supple as her other and the 'whatever it is' that

runs from under the big toe back to the arch is very tight and short pulling her

foot in too high of an arch and both of her big toes stick up but this foot is

much worse and constant. She also has what we can only describe as a bowing of

her foot between her ankle and the floor. Like all of her bones are going one

way and her skin/fat pads are going the other. This causes her to walk on the

outer edge of her foot when put in a normal shoe. She can't wear robeez type

shoes forever so we've got to figure out something.

We are also going to see the head of the ortho department here at the Cleveland

Clinic in a joint consult with our local ortho. The PT arranged it and they

will see what they think. Our local ortho has talked to Dr. P several times

both at conferences and over the phone about so I guess it will be a

'three Dr. consult'. LOL

I am just frustrated for her. She's delayed in walking because her ligaments

are loose, she's been overcorrected to 90 degrees for a long time until just

recently and as soon as we moved the shoe in she relapsed big time. UGH!!! I

wish there were an answer. It doesn't even have to be an easy one. Just an

answer.

Let me know what Dr. Pirani says if/when you need to go.

Chris

Re: Anyone Ever Have This Issue?

Yep. No avoiding it, 2-3 casts for 2 wks each every 6 months. What

part of 's foot is relapsing? We are so frustrated it is

sickening. Dr Pirani agreed to see Kai, and if (when) he relapses

again, that is probably what we will do just for a fresh perspective,

but we are at a loss ...

Angel

> >

> > Our daughter was seen once again by Dr. P on Monday. We were

in

> for a two week 'recasting' since just two weeks ago we'd come for

our

> normal 3 mos check up and she was once again relapsing in her

left

> foot.

> >

> > This has been an ongoing thing. Our local ortho had her

completely

> corrected and we did the FAB mostly 24/7. We go back to him

after 3

> mos when I knew she was relapsing in the left and he says she'll

need

> AFO's during the day and the ATTT surgery but she's not

relapsing.

> We knew better and headed to Iowa. Dr. P did a series of casts

last

> December/Jan and we went back in to the shoes for 20 hours a

day. In

> March we went back for a check up and she was relapsing again and

he

> recast her for one three week period. In June we go back and all

is

> fine. By the end of the summer I knew she was relapsing again.

> >

> > Two weeks ago he confirmed it and recast her. While we were

there

> the visiting Drs and Dr M and Dr P had much discussion about her

feet

> and I didn't catch all of it but some of it sounded a bit

ominous.

> This week Dr. P says he just doesn't get it. Can't figure out

why

> this foot won't stay corrected. He is at a loss and says we need

to

> see a neuro. We've done that already twice. She doesn't have

CP.

> No physician, therapist or any other professional we interact

with

> regularly and some not so regularly say she has any chance of

having

> it so that's moot as well. Dr. P just shook his head and said he

> just didn't know what to do now. We have the last cast on it and

> will soak it off in a few weeks. Then we are to set her foot at

50

> degrees - she has loose ligaments. But I'm sure it will relapse

> quickly again. Has anyone ever dealt with anything like this?

If

> so, have you found something that helped?

> > Chris

> >

> > A waist is a terrible thing to mind.

> >

> >